I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Tuesday, January 7, 2014

The Scan Monster

We have been enjoying some time together over the holidays. With the brutally cold weather, our holiday has been extended a bit. This, in my opinion, is not a bad thing.

Yesterday was scan day, what I like to call "Big Scan Day" because it includes extra Li-Fraumeni bonus imaging. In addition to checking for relapse cancer, we are looking for new cancer. Awesome, because one boogeyman (well, in our case, two boogeymen) isn't quite enough. It always makes for a very long day. Happily though, with school being called off for the weather yesterday, I could leave Olivia at home with Alex. It is a much, much longer hospital day with a 5 year old in tow.

Lauren, Brent and I arrived at the hospital at 8:30...and began the imaging marathon with two ultrasounds. We then headed over to MRI where Brent spent 3 hours in the tube. When he got out, I sent Lauren in to MRI and hoofed it over to CT with Brent. He was pretty whipped, so when his chest CT was done, he went across the hospital to clinic by himself, rather than trudging back to MRI to pick up Lauren. We are doing this all without a wheelchair and only one crutch, because he feels great. But at this point in the day, we were all getting tired. Brent teases that even an hour in the hospital somehow requires a nap when we get home. This day would end up being nearly 9 hours.

I waited for Lauren to finish her hour in the tube and then we met up with Brent in clinic to draw labs, have physical exams and begin the wait as results begin to trickle in. The main apprehension for me, was the chest CT. Brent has a cough. He actually has had one for some time, although with a runny nose, most thankfully. At this juncture in the scan cycle, your mind begins to fill with thoughts, questions and doubts. By the end of the day, you are positively drowning in them: Have I been foolish to be reassured by the runny nose? How could I be so stupid? Clearly, this masked the oncological problem in his lungs... Clearly.

Let's have small a musical interlude via Rihanna:I'm friends with the monster that's under my bedGet along with the voices inside of my headYou're trying to save me, stop holding your breathAnd you think I'm crazy, yeah, you think I'm crazy

It is kind of like that on scan day. I have found that this internal cacophony is something to just muscle your way through. I try to recognize that it is crazy making, the thoughts going on in my head, but there is truth in what the Scan Monster says. It is really hard to defend against a truth, one that is grounded in experience. Cancer has been our companion, and could be again.

So, I try to talk louder than the monster. But, there is the scan day megaphone, as well as the hospital triggers for me, as we tour the set of Nightmares Past throughout the day: The bank of payphones that I called Dan from, to tell him that Lauren had adrenal cancer as a baby. The fountain, where I would pass out pennies to the kids after each of Lauren's oncology check-ups, so they could make their wishes (I made a few of my own, believe me). The radiology waiting room, vivid purple, where Dan and I spent agonizing hours, worrying that Brent's cancer extended beyond the giant tumor on his pelvis, and again, a couple months later as we waited, terrified, for Lauren's second cancer staging. These visual reminders only turn up monster volume.

Incidentally, I don't hear the other voices so much, my everyday internal dialog, on scan day: We have been lucky in our cancer journey. We are fortunate to have these fine health facilities in our backyard, such that we can keep up with the scans. We have great doctors that are both careful and attentive. Small cancer is better than big tumors. Early is better than later...

Never is best of all.

Finally, this mental self-sparring was interrupted. I met with our new oncologist. We looked over the preliminary results and Lauren is deemed 'unremarkable.' (We naturally teased Hollywood, very happy for this, but differentiating this radiological opinion, from that of the world at large)

However, for Brent there were a couple of things to look at. We checked over the chest CT together, comparing it to October's scans, and I am reasonably comfortable with how things looked. The three small 'somethings' in his lungs are stable and likely nothing. They certainly have nothing to do with the cough, so I can turn off that mental soundtrack at least. We left with assurances that our new doc would call with the final results.

He called me around 8pm last night with additional CT conclusions, and a recommendation to do a follow-up ultrasound on Brent's thyroid to get a better look. A hoop to jump, but an easy one. The enlarged lymph nodes in his hip area will wait a month for the opinion of his orthopedic surgeon. That can wait.

It is quiet here today. The roaring winds of last night have been silenced, and the frozen disturbances in the forest behind our house have settled. I woke to sunshine, even if it is still frigid cold. It made me want to stay home, all the more. So, I snuggled Olivia, reading countless books to her, made a special breakfast for the kids and enjoyed the calm of the added bonus of winter holiday.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.